To think autism gets worse with each generation

It's funny how if you say you've been diagnosed with anything else for which there's no treatment, no one questions why you've got diagnosed. But with autism, it's always "why do you want a label?"

@MerryMaker so what you are hinting at is people getting an autism diagnosis that don't need it or don't have the condition.

Playing devil's advocate here: - What difference does that make?

Even if there was some over diagnosis, there are no drugs to take, no help available on the NHS, you might qualify for questions in advance and extra time in an interview or an extra 15 mins in an exam perhaps but other than that it makes absolutely no difference to anyone else. The vast majority of people who can work (with any condition) want to work as it gives meaning to life and makes you feel like a functioning member of society. To get any sort of disability benefits with autism requires you to hit very high criteria so there isn't even a financial benefit.

What a diagnosis might give someone though is validation tha they find life hard for a reason and have a placebo effect on helping them cope.

@MerryMaker

People always say you can't get a diagnosis unless it has a substantial impact on your life. I understand the theory. But if someone has a job, married, with kids and with friends, how does ASD have a substantial impact on their life?

My friendships were toxic. My first marriage was abusive. I did not realise I was vulnerable. I have been sexually assaulted and raped more than once, simply because I did not know how to protect myself. I had jobs over the years but the overwhelming anxiety attached to being able to turn up and do said jobs left me burnt out.

I am happily married now, to an autistic man. I have autistic children, don't bother with friends now and no longer work. All of these things make my life easier but also very very small.

My autism had such a substantial impact on me that it left me with complex PTSD, medicated and addicted. Unable to function as I previously had.

You could be talking about me. Job, kids, friends etc.

I work about 20h a week, simply cannot cope with more ("cannot cope" looks like total inability to concentrate or complete any task and likely self-harm or extreme anxiety if I push it).

I'm self-employed and do very well, but I crashed out of every employed job I ever had despite giving it my all - in hindsight I think I couldn't cope with the stress of my (simple) commute and the noise of the office.

People who know me would say that I am great with people - at work I lead a lot of volunteers and I am very good at reading people and placing them in the right jobs, engaging with them in a way that puts them at ease. It's because I am very tuned in to people's reactions/expressions and react to them more than most seem to. That's decades of masking for you.

Likewise friendships - I thrive on routine so I happily see the same friends every other Tuesday at 7pm but go to pieces when the holidays or whatever else changes things. I am very rigid in my thinking despite trying my utmost to adapt, be flexible etc.

There's lots more - personal hygiene is a disaster, for example. Significant issues with clothing. Use the same cutlery/crockery daily and can't tolerate others. Can't use loos outside of home. Lots of stims. No one notices any of the above.

Level 2 autism diagnosis by a reputable assessor, plus ADHD.

From the outside I am successful, together etc. I would be the last person anyone would assume had autism.

Since I'm on the thread again I would add - autism isn't a spectrum like the knob on a cooker, it's a spectrum like a light array or circular graph representing various skills and attributes associated with autism. And one autistic person won't be the same as the next. This graphic explains it better than I do: https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/

Now clearly if someone has poor speech and hypersensitivity and tics and and and, they are going to be more obviously autistic and will be much less able to adapt to NT society and function within it, but that doesn't mean that someone with a more moderate profile isn't autistic.

As we covered earlier in the thread, no, a diagnosis isn’t only based on self reported symptoms.

@BrightYellowTrain so it is self reported based on the substantial effort the individual thinks they are making. Without any idea if the substantial effort they are making is just normal.

The DSM and ICD no longer use ‘substantial impairment’. The DSM-5 uses ‘clinically significant impairment’. So, just because the impairment isn’t apparent to the outside world doesn’t mean it isn’t clinically significant. The ICD-11 states “The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.” So, again, may not be apparent to the outside world. You don’t know the toll having a job/family etc. takes and you don’t know the ‘exceptional effort’ involved.

@HPandthelastwish i think the suggestion is a sort of snowball effect is happening.

@Ohthatsabitshit but that's obvious isn't it. Like all conditions, medical advances means that more people survive premature birth or childhood illnesses, many people with autism have comorbid conditions that in yesteryear would have killed them.

People always say you can't get a diagnosis unless it has a substantial impact on your life. I understand the theory. But if someone has a job, married, with kids and with friends, how does ASD have a substantial impact on their life?

The question is are there more people with very high needsASD and if so why?

People are (rightly) pointing out that to be diagnosed, autism needs to have a substantial impact on your life.

Yet upthread we had descriptions of people who must have been autistic because of stuff like "they liked trains", "they were quiet" or "they hated the texture of jelly". I see this sort of thing IRL.

It feels as if it's the armchair diagnosing, that seems all the rage, that means people genuinely now don't see it as a (potentially disabling for some, having to live in an NT-geared world) condition that has an impact, just a new way of describing perfectly average variations in taste/personality. So ND people's challenges are then not taken seriously (ironically some of those doing the armchair stuff are ND themselves)

No @Dovecare I don’t and can’t imagine why you would think that.

Not roasted, reported though. Hopeful for a delete.

I’m not sure that I understand the model you described but it doesn’t really matter.

Yes I agree @MerryMaker though anecdotally adults with ASD develop into their third decade.

No you can’t because categorising involves division. There is no division as you move between support needs and support needs can differ between traits.

Because it's a spectrum. I'm AuDHD, my mum will never be assessed at this point in her life, but she is AuDHD and has suffered immeasurably all throughout her life.

She had no choice but to adapt, but suffer, because she had children to take care of and zero support.

I feel so sorry for her.

It was bad for me growing up too and I've only just been diagnosed. I'm staying to unmask and there is a fair bit of unravelling happening too. I'm done with trying to fit in. It didn't work for me anyhow!! Nor my mum! Who is 82.

Children develop anyway. There is a difference between an ASD child who is late to milestones like talking and walking, to an adult who is non verbal for life.
With adults, movement is usually far more slight.
But this is not an unusual situation with any disability. Maybe as an adult you get a better mobility aid that improves your functioning? Or your pain reduces spontaneously. Very few disabilities stay exactly the same from birth to death.

Who also fluctuate and whose symptoms can become severe. All you can really compare is a snapshot in any given moment. Which doesn't seem to really help your argument?

All autistics will be more impacted by their autism than me because I am not autistic and they are. They may be more impacted by their autism than another autistic but they aren’t “more autistic” as I understand the term.

My dd has been 1,2 and 3 as regards support needs.
So you can categorise but you can move from one category to another throughout your life. This is probably a very familiar idea to those who’ve watched an autistic person grow up. I certainly know many autistics who were non verbal and very impinged under 5 who are now much more in line with nt peers.

I have a mix of low functioning and high functioning symptoms that fluctuate depending on stress/no stress or circumstances. I’m already aware that an autistic person can have higher functioning and lower functioning areas. I’m aware that autism can become more severe and autistic people can regress, and that it can improve depending on the circumstances. I’m also aware that you can go from high to low support needs or low to high support needs across a life time.
But there are still autistic people with more autistic symptoms than I have overall who can function less than I can over all in comparably the same circumstances. There are autistic people who can function more than I can over all in comparably the same circumstances.

And quite rightly so as all have different severities in different areas and there has been movement in need. Interestingly the ones who didn’t get the early diagnosi( mostly women)have been the ones to increase hugely in level of need- significantly. I’m talking tier 4, supportive living, multiple services etc. Communication altered dramatically too.